When my BFS hit, I felt that inactivity was necessary for my symptoms. I still feel that to be somewhat true. At least for the first few weeks. Allowing my body to cool down, and my nerves to settle I think was integral to keeping it from getting much worse, very quickly.

Unfortunately I decided to stay inactive for 2 full months. I work from home, so I sat on my couch literally all day, with my laptop, and worked. I didn't go anywhere. I stopped exercising. And i intentionally did not move.

Tonight I am watching a special on Mars missions. They are discussing the adverse effects of zero gravity. They started talking about muscle atrophy due to lack of use, and the numbers were shocking. One astronaut who spent only 12 days in space collapsed on stage when she arrived home while speaking to the press. Astronaut Jerry Lindinger spent 5 months in space and lost over 65% of his muscle strength. He could lift 100lbs beforehand. Afterwards he couldn't lift 30lbs. Additionally, bone loss happens rapidly. 2 years in space would result in a 40 year old man returning to earth with the bones of a 90 year old.

Thats in space. What about on earth? Test subjects put into the equivalent of a water bed who did not do anything but lay there, these individuals lost 40% of their muscle strength.

In seven days.

Imagine what 2 months did to me.

A lot of you talk about perceived weakness and having lost significant amounts of strength through this ordeal. I was saying the same things. And this condition no doubt adds to fitness intolerance. And exercising can make things worse for some if done at the wrong time, or with the wrong intensity. But I just found these stats fascinating. I had no idea what inactivity does to bones and muscles so quickly.

Ever since I began a physical therapy regimen of my own 2 weeks ago, I have recovered back to my old strength levels. My fatigue after working out is still significantly more than it should be, but that is slowly improving as well. The worst possible thing I could have done to myself was sit with a defeated mentality for 2 months on my couch.

BFSBurger wrote:When my BFS hit, I felt that inactivity was necessary for my symptoms. I still feel that to be somewhat true. At least for the first few weeks. Allowing my body to cool down, and my nerves to settle I think was integral to keeping it from getting much worse, very quickly.

Unfortunately I decided to stay inactive for 2 full months. I work from home, so I sat on my couch literally all day, with my laptop, and worked. I didn't go anywhere. I stopped exercising. And i intentionally did not move.

Tonight I am watching a special on Mars missions. They are discussing the adverse effects of zero gravity. They started talking about muscle atrophy due to lack of use, and the numbers were shocking. One astronaut who spent only 12 days in space collapsed on stage when she arrived home while speaking to the press. Astronaut Jerry Lindinger spent 5 months in space and lost over 65% of his muscle strength. He could lift 100lbs beforehand. Afterwards he couldn't lift 30lbs. Additionally, bone loss happens rapidly. 2 years in space would result in a 40 year old man returning to earth with the bones of a 90 year old.

Thats in space. What about on earth? Test subjects put into the equivalent of a water bed who did not do anything but lay there, these individuals lost 40% of their muscle strength.

In seven days.

Imagine what 2 months did to me.

A lot of you talk about perceived weakness and having lost significant amounts of strength through this ordeal. I was saying the same things. And this condition no doubt adds to fitness intolerance. And exercising can make things worse for some if done at the wrong time, or with the wrong intensity. But I just found these stats fascinating. I had no idea what inactivity does to bones and muscles so quickly.

Ever since I began a physical therapy regimen of my own 2 weeks ago, I have recovered back to my old strength levels. My fatigue after working out is still significantly more than it should be, but that is slowly improving as well. The worst possible thing I could have done to myself was sit with a defeated mentality for 2 months on my couch.

Kevin, man, I think I love you.

I had an idea that inactivity could be damaging, but it's been brought home to me quite starkly by your post, and by the stats you include. I've been relatively inactive - couch-bound - for months now, and it's pretty clear to me after reading your post the extent of the damage I'm doing to myself.

Thanks so much for this post, man. Movement, movement, movement will be my new mantra.

I think that's what everyone's first reaction is... to sit REAL still... let everything go away (well, try anyways)... a year later, NOTHING HAS CHANGED! So workout time and lets see how I can push myself. Yay.

This fear about Muscle Atrophy and it being a sign of ALS. On the contrary, a perfectly healthy person doing absolutely nothing will induce muscle atrophy. Big time. So that was my point! Whats crazy is that bone loss also increases. That (i think) can lead too all kinds of health issues.

Guys I have to say my way of managing BFS after all these weeks of researching is simple: Im treating it like a viral infection. That means I have been boosting my immune system with every trick in the book I know of to benefit my body. "Whol-istic" approach. Everything. Perfect sleep. Perfect Exercise (this means NO over-exertion. fitness only to the point that its slightly difficult, then rest, rest, rest, rest. Repeat ...), juicing organic vegetables daily, plenty of liquids (that are fortified with potassium and sodium in very minimal amounts), Gatorade 3x a day (just because it helps and only God knows why). Basically giving my body the biggest "pampering" of the century.

Regarding exercise - if anyone cares - its so important to do only that which you can tolerate. And not even just during the workout. Its what you can tolerate 24 hours later. How you feel the next day, and the day after is what matters the most. That means if you do a workout, and you are shaking and spasming and seriously unwell 24-48 hours later, you need to do *half* that workout the next time around. Here are some tips that I have had success with over the last 8 weeks:

1) Exercise only to the point that you only feel a little fatigued the next 2 days. If you are worse than that, you did too much.

2) Write down your first workout. Write everything you did. The exercise, the weight, and how many times.

3) Do a whole body workout. Try to hit every muscle group. This doesn't mean kill yourself. It just means do circuit training. The logic here? Your muscles all over are suffering. Movement not only improves nerve regeneration but it also generates new mitochondria in muscles. NEW is what we need right now because EXISTING cells are malfunctioning. So do one set of shoulder press. One set of bench press. One set of incline bench. One set of back pulls. One set of pull downs. One set of chest flys. One set of squats with a bar. One set of thigh "curls". One set of rear leg "curls" (machine). Then walk on the treadmill. Try to get a full, well rounded thing in place.

4) Only do 1 set of everything. There is no need to push it. You want movement. You want slight resistance. The workout may be a total joke. Good ... in 3 days you can kick up the weight on everything by another 5lbs. Then see how you feel 24-48 hours later. But 1 set of every muscle group.

5) Have Gatorade handy. Your muscles MAY have a channelopathy going on. I posted about this in another thread. This means you may have some sodium/potassium malfunctioning going on in your muscles, causing this. The importance of saturating them with glucose, sodium, and potassium is right then. During and after that workout. Get some and saturate them while you exercise. I promise its going to help somehow.

6) Have a post workout nourishment. I use Cytogainer. Creatine is huge for muscle dysfunctions. Cytogainer gives me a full carb / protein / glutamine / creatine mix that goes right in after the workout and replenishes and strengthens.

8 ) How much weight? I normally press 75lbs above my head with dumbbells (each hand) for shoulder presses. Four sets of them, 8 reps. The last 8 weeks? I picked 25lbs dumbbells. One set. 10 reps. Then put them down. But that was too much. The next day I felt like I wanted to die. So weak. So the next workout? only 5 reps of everything. It was too easy. But a day later I actually felt okay. And the next time I felt even better. You have to listen to your body. But my weight was cut down to 30% of my previous. When i first started out? I was doing 10lb dumbbells. So I had cut it even more initially. I call them grandma workouts and that's what they are! So keep the weight to ONLY what you can do 10 reps of very easily.

9) Treadmill - im still going on 8 weeks and im only at 7 1/2 minutes. Walking. I had to work up to that too. Believe me. I am doing speed 3.0 ... incline 5.0 ..... 7 1/2 minutes. Sometimes my left foot acts up and i can feel it vibrating like crazy while im walking. But it was not until I started this "every 4 days" workout regimen that my calf which was cramped for 2 months finally released. And it hasn't come back. I was convinced this was my first MS symptom too...

10) Salt baths. You will probably never feel something so wonderful as if you do these workouts and then go have a salt bath right before bed. Its the most relaxing, therapeutic thing on earth. Highly recommended. Couldn't have done it without them. I prefer Dead Sea salts. Unbelievable. Epsom is a distant second.

So that's what I am doing. And its working. I had lost nearly 20lbs .... Down from 198 to 180 .... told the doctors i had cancer .... or ALS .... After 6-8 weeks of this very slow, methodical, gradually increasing regimen I weighed in at 189 today. Up 9 lbs .... see!

BFSBurger wrote:When my BFS hit, I felt that inactivity was necessary for my symptoms. I still feel that to be somewhat true. At least for the first few weeks. Allowing my body to cool down, and my nerves to settle I think was integral to keeping it from getting much worse, very quickly.

Unfortunately I decided to stay inactive for 2 full months. I work from home, so I sat on my couch literally all day, with my laptop, and worked. I didn't go anywhere. I stopped exercising. And i intentionally did not move.

Tonight I am watching a special on Mars missions. They are discussing the adverse effects of zero gravity. They started talking about muscle atrophy due to lack of use, and the numbers were shocking. One astronaut who spent only 12 days in space collapsed on stage when she arrived home while speaking to the press. Astronaut Jerry Lindinger spent 5 months in space and lost over 65% of his muscle strength. He could lift 100lbs beforehand. Afterwards he couldn't lift 30lbs. Additionally, bone loss happens rapidly. 2 years in space would result in a 40 year old man returning to earth with the bones of a 90 year old.

Thats in space. What about on earth? Test subjects put into the equivalent of a water bed who did not do anything but lay there, these individuals lost 40% of their muscle strength.

In seven days.

Imagine what 2 months did to me.

A lot of you talk about perceived weakness and having lost significant amounts of strength through this ordeal. I was saying the same things. And this condition no doubt adds to fitness intolerance. And exercising can make things worse for some if done at the wrong time, or with the wrong intensity. But I just found these stats fascinating. I had no idea what inactivity does to bones and muscles so quickly.

Ever since I began a physical therapy regimen of my own 2 weeks ago, I have recovered back to my old strength levels. My fatigue after working out is still significantly more than it should be, but that is slowly improving as well. The worst possible thing I could have done to myself was sit with a defeated mentality for 2 months on my couch.

Yup. This is exactly what I always tell my elderly patients when they get admitted to the hospital. After only ONE day of lying in that hospital bed, their strength and functional mobility declines rather rapidly. I always draw the comparison between being on bedrest vs. the astronauts in zero gravity. The bones, muscles, joints and circulatory system; the entire human organism NEEDS movement; particularly, weight bearing exercise. We thrive on it. This was something my rheumatologist told me, early on. He said, "get yourself on a regular physical exercise routine, and practice it like it's your new religion." He was so spot-on. If a rheumatologist, who specializes in (often painful) auto-immune conditions like lupus and fibromyalgia, recommends physical activity, it sure as sh-t has got to help us with our BFS. For me, it doesn't matter if I push myself too hard and then suffer, as a result. I just need to be careful to use proper form and avoid injuring myself, because that causes me to miss work-outs, and then I'm in trouble.

Glad to hear you are on the mend, Burger.

Blessings, Sue

Be careful about reading health books. You may die of a misprint. Mark Twain

Thanks Sue. You mentioned that you no longer have BFS symptoms, and those other sensory / muscular issues, and attribute it largely to getting back to controlled, gradually increasing physical therapy. Regarding your comment immediately above, do you revert back to those symptoms if you miss workouts?

I need to comment that this is a slow process. Some days i sitll get that burning / swelling foot, burning hands / painful foot thing. But its how you feel on the aggregate that changes. At least so far. I am only about 3-4 weeks into this return to activity and its so methodical for me. I am being very careful. Everything is written down. Name of exercise. Reps. Durations. Rest 3 days ... then Repeat. Symptoms do get worse ... and then better .... kind of in an ebb and flow .... but over all, I am in another universe from where I was the day I wrote the thread "Something's not right" ... and that was not very long ago.

BFSBurger wrote:Thanks Sue. You mentioned that you no longer have BFS symptoms, and those other sensory / muscular issues, and attribute it largely to getting back to controlled, gradually increasing physical therapy. Regarding your comment immediately above, do you revert back to those symptoms if you miss workouts?

I need to comment that this is a slow process. Some days i sitll get that burning / swelling foot, burning hands / painful foot thing. But its how you feel on the aggregate that changes. At least so far. I am only about 3-4 weeks into this return to activity and its so methodical for me. I am being very careful. Everything is written down. Name of exercise. Reps. Durations. Rest 3 days ... then Repeat. Symptoms do get worse ... and then better .... kind of in an ebb and flow .... but over all, I am in another universe from where I was the day I wrote the thread "Something's not right" ... and that was not very long ago.

Hmm. Interesting question. I recently tore my calf muscle, then immediately got the flu, so I was out of the gym for about six weeks. It would be difficult for me to quite say whether my symptoms returned or not. Only because I'm a bit older than when this first hit me and I have to assume that some of my challenge with resumption of an exercise program probably had more to do with just not being such a spring chicken, any more. Let's face it, the older we are, the more rapidly our bodies deteriorate when we don't move.

Ok, if I'm being objective, I will answer that yes, my symptoms did re-surface, very mildly, but only my tremors, clonus, and perceived weakness, and only when I first tried to exert myself during the first few work-outs. And I did feel a longer recovery time and more aches and pains than usual, however, again, this could be related to age and not BFS at all. Otherwise, I felt perfectly normal. I still feel an odd fascic here and there, but I honestly don't think of those in terms of BFS because they are so rare and infrequent that I believe I'm just twitching like a "normal" person would, at this point. For example, this week, I had a mild eye twitch, but that isn't cause for alarm, for any person; BFS notwithstanding.

Does that answer your question? I've been back at it for several weeks now and am back to my strong, non-tremoring, non-twitchy self.

Blessings, Sue

Be careful about reading health books. You may die of a misprint. Mark Twain

I think this is a virus, or immune dysfunction on some level. It resurfaces if you get sick, when your immune system is low, etc. It goes away when you're back. The herpes viruses do this on the regular. And im sure there are more we haven't discovered yet. Reactivation and suppression are common. I may be the only one on this site who bothers, but I finally have an appointment with Dr Klimas at the CFS/ME clinic and I am going to get their battery of immune function / pathogen tests.